Surgery is the main treatment for cancer of the vulva. It may be used either alone or in combination with radiotherapy and chemotherapy. All these treatments are explained in more detail in the following pages.

During surgery only the minimum amount of tissue that is necessary to get rid of the tumour will be removed. However, the type of surgery will depend on the size and position of the cancer. It is sometimes possible to have a small operation to remove the cancer, together with some surrounding normal tissue. Sometimes this may be all the treatment that is needed. Unfortunately, some women may need a larger operation that involves removing the labia and sometimes the clitoris.

Radiotherapy may sometimes be given to shrink the cancer before surgery. It can also be given after surgery to make sure any remaining cells are destroyed, or it can be used instead of surgery. Often radiotherapy and chemotherapy can be used together (chemoradiation) to make them more effective. Occasionally, if the cancer has spread to other parts of the body, chemotherapy may be used on its own.

The main treatment for cancer of the vulva is surgery. Radiotherapy and chemotherapy may also be used.

Treatment planning

Your doctor will plan your treatment by taking into consideration a number of factors, including the type of cancer, its position and size, whether it has spread (stage) and your general health. Cancer specialists follow national guidelines for treating vulval cancer. The treatment you have will be based on the guidelines, but tailored to your particular situation.

Sometimes you may be asked to take part in a clinical trial of a new treatment.

If you have any questions about your treatment, don’t be afraid to ask your doctor or nurse. It often helps to make a list of questions for your doctor and to take a close friend or relative with you. They can remind you of questions you wanted to ask, and afterwards help you remember what the doctor said.

Giving your consent

Before you have any treatment your doctor will explain the aims of the treatment to you. You will usually be asked to sign a form saying that you give your permission (consent) for the hospital staff to give you the treatment. No medical treatment can be given without your consent, and before you are asked to sign the form you should have been given full information about:

the type and extent of the treatment you are advised to have the advantages and disadvantages of the treatment any possible other treatments that may be available any significant risks or side effects of the treatment.

If you do not understand what you have been told, let the staff know straightaway so that they can explain again. Some cancer treatments are complex, so it is not unusual for people to need repeated explanations. Again, it can be helpful to have a friend or relative with you.

People often feel that the hospital staff are too busy to answer their questions, but it is important for you to be aware of how the treatment is likely to affect you. The staff should be willing to make time for you to ask questions.

You can always ask for more time to decide about the treatment, if you feel that you can’t make a decision when it is first explained to you. You are also free to choose not to have the treatment, and the staff can explain what may happen if you do not have it.

It is important to tell a doctor, or the nurse in charge, so that they can record your decision in your medical notes. You do not have to give a reason for not wanting to have treatment, but it can be helpful to let the staff know your concerns so that they can give you the best advice.

Benefits and disadvantages of treatment

Many people are frightened at the idea of having cancer treatments, because of the side effects that can occur. However, although many of the treatments can cause side effects, these can usually be well controlled.

Treatment can be given for different reasons and the potential benefits will vary depending upon the individual situation.

Early-stage vulval cancer

In women with early-stage vulval cancer, surgery is often done with the aim of curing the cancer. Occasionally, additional treatments are also given to reduce the risks of it coming back.

Advanced vulval cancer If the cancer is at a more advanced stage the treatment may only be able to control it, leading to an improvement in symptoms and a better quality of life. However, for some people the treatment will have no effect upon the cancer and they will get the side effects without any of the benefit.

Treatment decisions

If you have been offered treatment that aims to cure your cancer, deciding whether or not to accept it may not be difficult. However, if a cure is not possible and the treatment is being given to control the cancer for a period of time, it may be more difficult to decide whether to go ahead with treatment. Making decisions about treatment in these circumstances is always difficult, and you may need to discuss this in detail with your doctor. If you choose not to have treatment, you can still have supportive (palliative) care, with medicines to control any symptoms.

Second opinion

A number of cancer specialists work together as a team to decide the most suitable treatment for each patient. Even so, you may want to have another medical opinion. Most doctors will be willing to refer you to another specialist for a second opinion, if you feel it will be helpful. The second opinion may cause a delay in the start of your treatment, so you and your doctor need to be confident that it will provide useful information. If you decide to have a second opinion, it may be a good idea to take a friend or relative with you, and to have a list of questions ready, so that you can make sure your concerns are covered during the consultation.

Treating vulval cancer with surgery

Your doctor will discuss with you the most appropriate type of surgery, depending on the stage of your cancer. Before your operation, make sure you have talked it over fully with your doctor. You will also be able to speak to a gynaecological nurse specialist who can give you information and support, particularly in the period before and after your operation.

All operations for cancer of the vulva will remove the area of the skin where the cancer is. This can range from removing the cancer and a small surrounding area of healthy tissue, to a radical vulvectomy in which the labia and sometimes the clitoris are removed.

The cancer will be removed using one of the following operations:

Wide local excision takes out the cancer and a border (margin) of healthy cells, usually at least 1cm, all around the cancer. Sometimes doctors use laser treatment to remove the abnormal cells instead of a blade (scalpel). A laser is a high-energy beam of light.

Radical local excision takes out the cancer and a larger area of normal tissue all around the cancer. The lymph nodes may be removed (known as lymph node dissection).

Partial vulvectomy removes part of the vulva.

Radical vulvectomy takes out the entire vulva including the inner and outer labia and the clitoris. Usually the surrounding lymph nodes are also removed.

Pelvic exenteration is done if the cancer has spread beyond the vulva to the organs nearby. These include: the lower bowel, the bladder and the cervix, the uterus and vagina. The surgeon removes any affected organs. Any surgery aims to completely remove the cancer while also preserving as much normal tissue as possible.

Usually only a small amount of unaffected skin is removed with the cancer, so it is often possible to stitch the remaining skin neatly together. However, if it is necessary to remove quite a lot of skin, you may need to have a skin graft, or skin flaps. To do this, the surgeon may take a thin piece of skin from another part of the body (usually the thigh or abdomen) and stitch it on to the operation site. It may be possible to move (rotate) flaps of skin in the vulval area to cover the wound.

A radical vulvectomy is a major operation on a physical, emotional and sexual level. Many hospitals that offer this kind of surgery also have specialist nurses who can support you and help you to talk through how you are feeling. Some of the issues that vulval surgery raises are discussed in the section 'How surgery may affect your sex life'.

Lymph nodes

The lymph nodes in the groin are usually the first place to which vulval cancer can spread. Lymph nodes are part of the lymphatic system, and are found mainly in the groin, neck and armpits. In order to plan treatment it helps doctors to know whether any cancer cells have spread from the vulva to the lymph nodes in the groins.

If the cancer is deeper than one millimeter, you may be advised to have the lymph nodes surgically removed from one or both groins. This is to check for cancer cells. The lymph nodes are usually removed through a separate cut (incision) in each groin. If the vulval cancer is at the very earliest stage you will not usually need to have any surgery to your lymph nodes.

Sentinel node biopsy

A new method of checking whether the cancer has spread into the lymph nodes is currently being tried in research trials. It involves injecting a tiny amount of radioactive liquid around the area of the cancer before the operation and then scanning the nodes to see which one has first taken up the radioactive liquid. A blue dye is also injected into the area of the cancer during the operation, which stains the lymph nodes blue. The surgeon removes only the first one or two lymph nodes that the fluid goes into (known as the sentinel nodes). The nodes are then be tested to see whether they contain cancer cells. It is hoped that this method of checking the lymph glands will cause less lymphoedema (see after surgery) than the other methods, but will be as effective at detecting the cancer.

Before your operation

You are usually admitted to hospital a day or so before your operation. When you arrive on the ward you will be shown around and the nurses will take your medical and personal details. Make sure that you talk to your nurse or doctor about any questions or concerns that you have.

It often helps to write any questions down so that you don’t forget them, or have a close friend or relative with you when you talk to the doctor or nurse.

You will be seen on the ward by a member of the surgical team. They will take your full medical history before examining you and arranging for any further tests that may be necessary. Once the results of the tests are known, your doctor will discuss these and the operation with you. The type of operation you need will have been explained to you before your admission to hospital.

Preparation

You will be asked to wear special elastic stockings during and after the operation (until you are discharged home) to prevent blood clots forming in your legs. The doctor who will give you your anaesthetic (the anaesthetist) will come to see you to explain the anaesthetic details to you.

Treating vulval cancer with radiotherapy

Radiotherapy treats cancer by using high-energy rays which destroy the cancer cells, while doing as little harm as possible to normal cells.

When radiotherapy is used External radiotherapy Internal radiotherapy

When radiotherapy is used

Radiotherapy may be given to the vulva and the lymph nodes after surgery. This is to make sure that any remaining cancer cells are destroyed, and so reduce the risk of the cancer coming back. Whether you have radiotherapy or not will depend on the stage of your cancer, its size, and also whether it has spread to the lymph nodes (and if so, how many are affected).

Sometimes radiotherapy is given before surgery to shrink the cancer and make it easier to remove.

If the cancer is known to have spread to the lymph nodes, radiotherapy may be used instead of surgery to treat this area. Radiotherapy and chemotherapy may be given at the same time. This is known as chemoradiation.

In advanced vulval cancer (where the cancer has come back or spread) radiotherapy may be used to shrink a tumour and reduce symptoms to improve quality of life. This is known as palliative radiotherapy.

We have a separate section on radiotherapy, which gives detailed information about the treatment and its side effects.

Each woman's treatment will be designed individually. A course of treatment may be with external radiotherapy only, or may consist of two or more ‘phases’ of treatment. The first phase may be external x-ray treatment and the second may involve more external treatment given to a smaller area, or may be internal radiotherapy with radioactive wires. Internal radiotherapy is known as brachytherapy. Sometimes a mould may be used to hold radioactive metal next to the vulva to give a dose of radiotherapy. These treatments are 'tailor-made', and the details of the treatment will be discussed with you beforehand.

External radiotherapy

External radiotherapy is normally given as a series of short daily treatments in the hospital radiotherapy department. High-energy x-rays are directed from a machine at the area of the cancer. The treatments are usually given from Monday to Friday, with a rest at the weekend. The number of treatments will depend on the type and size of the cancer but the whole course of treatment for vulval cancer will usually last a few weeks. Each treatment takes around 10–15 minutes. Your doctor will discuss the treatment and possible side effects with you.

Before each session of radiotherapy the radiographer will position you carefully on the couch and make sure that you are comfortable. During your treatment you will be left alone in the room, but you will be able to talk to the radiographer who will be watching you carefully from the next room.

Radiotherapy is not painful, but you have to lie still for a few minutes while your treatment is being given. External radiotherapy will not make you radioactive and it is perfectly safe for you to be with other people, including children, after your treatment.

Side effects

Radiotherapy to the vulva and groin causes general side effects such as diarrhoea and tiredness, and it can also cause other specific side effects. These side effects can be mild or troublesome, depending on the strength of the radiotherapy dose and the length of your treatment. Your radiotherapy doctor (clinical oncologist) will tell you what to expect.

Skin reaction As the skin in the area of the vulva and groin is very sensitive, radiotherapy will cause soreness. Only use lukewarm water to wash the treatment area, and pat the area dry gently with a towel. Talc or perfume may cause irritation, so avoid using these. Your specialist can prescribe cream to help soothe the soreness. Your radiographer or nurse can advise you on how to look after your skin during this time.

Inflammation of the bladder lining (cystitis) Radiotherapy to the groin may cause inflammation of the lining of the bladder, which can make you feel that you want to pass urine frequently. You may also feel a burning sensation when you pass urine. Your doctor can prescribe medicines that can make passing urine less uncomfortable. It helps to drink plenty of water and other fluids to make your urine more dilute.

Diarrhoea Radiotherapy may also irritate the bowel and cause some diarrhoea. If this is a problem let your doctor know, as medicines can be prescribed to reduce it. It is important to drink plenty of water to replace the fluid lost through diarrhoea.

Tiredness As radiotherapy makes you tired, try to get as much rest as you can, especially if you have to travel a long way for treatment each day.

The side effects listed above may continue for several weeks and then gradually disappear once your course of treatment is over. It is important to tell your doctor if they continue.

Hair loss Radiotherapy can make your hair fall out in the area being treated, and this may be permanent.

Narrowing of the vagina The vagina can be affected by radiotherapy to the pelvic area. While having radiotherapy, and for a few weeks after treatment, the vagina will become tender. In the long term this irritation can leave scarring which makes the vagina narrower and less flexible. This may make having sex uncomfortable or difficult. Because of this you will be advised to use a vaginal dilator with a lubricating jelly, to keep the vaginal walls open and supple. The dilators are usually made of plastic and can be given to you by your nurse or doctor, who will advise you how to use them.

Applying a hormone cream to your vagina may help. These are available on prescription from your doctor. Regular intercourse may also help to prevent the vagina from shrinking. But you may, understandably, not feel ready for this for some time.

We have a section on pelvic radiotherapy in women, which has information on side effects, and ideas on how to cope with them.

Internal radiotherapy

Internal radiotherapy (also called interstitial radiotherapy, implant therapy, or brachytherapy) involves putting a radioactive material directly into the cancer. This type of therapy is given by inserting radioactive needles or wires into the cancer while you are under a general anaesthetic. Over a few days, the needles or wires give a high dose of radiotherapy directly to the tumour from the inside.

As the implant is radioactive you will need to stay in your room in hospital, and visitors will be limited. While the radioactive wires or needles are in place, low levels of radiation are given out from them. You will need to stay in a single room in hospital for a few days, until the doctor has removed the radioactive needles or wires from your body.

Although it will be safe for your family and close friends to visit you for short periods, children and pregnant women will not be allowed to visit, to avoid any chance of them being exposed to even tiny amounts of radiation.

The doctors and nurses caring for you will also only be able to stay in your room for short periods at a time. This is because they may be looking after several people having internal radiotherapy treatment, and they must keep their exposure to the low level of radioactivity to a minimum.

The safety measures and visiting restrictions might make you feel very isolated, frightened and depressed, at a time when you might want people around you. If you have these feelings it is important that you let the staff looking after you know. It might also be helpful to take in plenty of reading material and things to keep you occupied while you are in isolation. The isolation only lasts as long as the radioactive wires are in place (usually for a few days). Once the wires are removed the radioactivity disappears and it is perfectly safe to be with other people.

Side effects

While the needles are in place, the tissues around them will become swollen. This usually settles by the time they are removed. The treated area will become sore about 5–10 days after the needles or wires have been removed and this may last for several weeks. Your doctor can prescribe painkillers to help to relieve the discomfort.

Long-term effects of radiotherapy to the vulva

As the skin of the vulva is very sensitive to radiation it can become discoloured (reddened or darker) and swollen for months or sometimes years after radiotherapy. The swelling can be reduced by gentle, upwards massage, which you can be taught to do by a specialist nurse or physiotherapist, but unfortunately the discoloration of the skin is permanent.

Treating vulval cancer with chemotherapy

Chemotherapy is the use of anti-cancer (cytotoxic) drugs to destroy cancer cells. Chemotherapy drugs are sometimes given as tablets or, more usually, by injection into a vein (intravenously).

Chemotherapy can often be given to you as an outpatient, but sometimes it will mean spending a few days in hospital.

Chemotherapy may be used at the same time as radiotherapy, to improve the effectiveness of treatment. There are different ways in which this is done, depending on the drugs used and the chemotherapy plan that is being followed.

Sometimes it means that chemotherapy is given continuously over a four-day period during the first and last week of the radiotherapy treatment. More commonly it is given once a week during the radiotherapy course.

Our section on chemotherapy discusses the treatment and its side effects in more detail. This section also includes information about individual drugs you may have as part of your treatment, and their particular side effects.

Side effects

Chemotherapy can cause unpleasant side effects, but for women with vulval cancer that has come back or spread it can also make them feel better by relieving the symptoms of the cancer. Most people have some side effects from chemotherapy, but these can usually be well controlled with medicines.

Lowered production of blood cells While the drugs are acting on the cancer cells in your body, they also temporarily reduce the number of normal cells in your blood. When these cells are reduced, you are more likely to get an infection and you may tire easily. If you have any signs of infection during chemotherapy, you will be given antibiotics. Less commonly, if people become anaemic due to the chemotherapy they may need a blood transfusion.

Nausea and vomiting Some chemotherapy drugs may cause nausea and vomiting. There are now very effective anti-sickness drugs (anti-emetics) to prevent or reduce nausea and vomiting. Your doctor will prescribe these for you. We can send you a factsheet on dealing with nausea and vomiting.

Sore mouth and loss of appetite Some chemotherapy drugs can make your mouth sore and cause small mouth ulcers. Regular mouthwashes are important and your nurse will show you how to do these properly. If you don’t feel like eating during treatment you could try replacing some meals with nutritious soft drinks or a soft diet.

Hair loss Unfortunately, some chemotherapy drugs can make your hair fall out. You can ask your doctor if the drugs you are taking are likely to cause hair loss. People who lose their hair often cover up by wearing wigs, bandanas, hats or scarves. Most patients are entiltled to a free wig from the NHS. Your doctor or nurse will be able to arrange for a wig specialist to visit you. If your hair does fall out it will grow back over a period of 3–6 months, once the chemotherapy has finished.

Chemotherapy for vulval cancer may also increase any soreness of the skin caused by radiotherapy.

Although they may be hard to bear at the time, most of these side effects will disappear once your treatment is over.

Chemotherapy drugs affect different people in different ways. Some people find that they are able to lead a fairly normal life during their treatment, but many become very tired and have to take things much more slowly. Just do as much as you feel like and try not to overdo it.